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Author Notes:

Correspondence: Christina_Ullrich@dfci.harvard.edu; Tel.: +1-617-632-4997

J.W. and C.U. conceived of the manuscript, K.E.B. and C.U. developed the manuscript outline, obtained references, and wrote the paper.

The final manuscript was edited, reviewed, and agreed upon by all authors.

The authors declare no conflict of interest.

Subjects:

Keywords:

  • hospice
  • mobile apps
  • patient-reported outcomes
  • pediatric palliative care
  • quality of life
  • symptom management

From the Child's Word to Clinical Intervention: Novel, New, and Innovative Approaches to Symptoms in Pediatric Palliative Care.

Tools:

Journal Title:

Children

Volume:

Volume 5, Number 4

Publisher:

, Pages 45-45

Type of Work:

Article | Final Publisher PDF

Abstract:

Despite vast improvements in disease-based treatments, many children live with life-threatening disorders that cause distressing symptoms. These symptoms can be difficult to comprehensively assess and manage. Yet, frequent and accurate symptom reporting and expert treatment is critical to preserving a patient's physical, psychological, emotional, social, and existential heath. We describe emerging methods of symptom and health-related quality-of-life (HRQOL) assessment through patient-reported outcomes (PROs) tools now used in clinical practice and novel research studies. Computer-based and mobile apps can facilitate assessment of symptoms and HRQOL. These technologies can be used alone or combined with therapeutic strategies to improve symptoms and coping skills. We review technological advancements, including mobile apps and toys, that allow improved symptom reporting and management. Lastly, we explore the value of a pediatric palliative care interdisciplinary team and their role in assessing and managing distressing symptoms and minimizing suffering in both the child and family. These methods and tools highlight the way that novel, new, and innovative approaches to symptom assessment and management are changing the way that pediatrics and pediatric palliative care will be practiced in the future.

Copyright information:

Published by MDPI AG, Basel, Switzerland

This is an Open Access work distributed under the terms of the Creative Commons Attribution 4.0 International License (https://creativecommons.org/licenses/by/4.0/).
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